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December 26th , 2024

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Angela Amuzu

2 years ago

CHRONICALLY INVISIBLE

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Health

2 years ago



Living with a chronic illness can make you feel invisible and misunderstood because no one can tell that you are sick (I look healthy on the outside) until you are in chronic pain or get tired often. This makes it difficult to live a full and productive life, as well as delays diagnosis. Even on days that I do not feel fatigued or in pain, my energy is limited, and I often have to carefully choose what I spend time on.

A great resource for coping for me has been joining support groups on Facebook and following the personal Instagram account of people with the same condition. I can vent (I’m allowed to have feelings that can change my mood), navigate on my worst days, get Doctor referrals, suggestions to deal with pain and fatigue, suggestions for Achalasia friendly foods, hacks that make eating, and sleeping better amongst others.

Confessions of an Achalasia Warrior…

I wish I could apologize in advance if my pain caused you pain

I wish I could apologize in advance if my discomfort cause you discomfort

I wish I could apologize in advance for how my mind and body deal with stressful situations

I wish I could apologize in advance for changes in my voice that make you uncomfortable and me unapproachable

I wish I could apologize in advance for the times I raise my voice in anguish when you can’t hear me (when I feel I have put in way too much effort and can’t keep repeating myself)

I wish I could apologize in advance for disappointing you because of my anxiety and fear 

I wish I could let you know in advance when I cannot talk or respond to a comment

When I cry out to you in frustration, please hear me, Lord

When I’m happy one moment and moody the next, please bear with me

When I’m actively involved and withdrawn the next moment, please bear with me

When I’m frustrated that I can’t identify my triggers, please calm me Lord

When I’m frustrated that my medications don’t work on time, please calm me Lord

When I’m frustrated that I can’t share a bowl of food with people I love, please calm me Lord

When I get jealous seeing people eat things I can’t eat, please calm me Lord

One thing having Achalasia has taught me is to be kind to everyone. You will never know what battle they are fighting silently or the things they have to deal with when they open up about their problems or struggles.

As always, please note that I am not a medical professional and every piece of information I share is based on my research, experiences, and struggles. I hope that it would be of help to someone else.

 

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Angela Amuzu

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